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Can you have positive labs and 'CFS/ME'?

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by dan062, Oct 30, 2014.

  1. Sidereal

    Sidereal Senior Member

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    Have you had a rheumatology work-up?
     
  2. CantThink

    CantThink Senior Member

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    When I was a child yes, so last time would be maybe 1993 or 1994. In the UK getting any kind of work up done with an M.E. diagnosis on one's medical file is nigh on impossible. :meh:
     
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  3. xchocoholic

    xchocoholic Senior Member

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    It's been so long (from 1/1990 - 9/2006) since I had ataxia and right foot drag that I can't remember if 1 leg was more affected that the other at times. Walking any distance always resulted in both legs feeling like they weighed 100 lbs each and I had to think about moving each leg. My right foot typically didn't drag until I'd walked for about 5-10 minutes. I wobbled all the time and had to hold onto anything available.

    My ataxia and right foot drag appear to have been from gluten intolerance since these vanished 1 year post gf diet. It took me several months to adjust to walking without thinking about it again tho. The connection was lost.

    I'm currently experimenting with walking backwards to bring back that connection. My brain is really struggling with this. Lol.

    If you're unfamiliar with gluten intolerance / neurological symptoms Dr Perlmutter, Dr Hadjivassiliou or any of the doctors from the gluten summit can explain this.

    Tc .. x
     
    Last edited: Oct 31, 2014
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  4. Sidereal

    Sidereal Senior Member

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  5. dan062

    dan062 Senior Member

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    I'm in Ireland, too, Sidereal! (Strange coincidence but there seem to be a disproportionate amount of us on these forums. Maybe it's the chatter in us that makes us take to forums with our concerns?!)

    The main thing I'm getting from the continued responses is that it's very possible to have lab results that would seem to argue towards a diagnosis (e.g. ANA) but not actually get diagnosed with anything, correctly or incorrectly. I honestly thought that my case had to be pretty unique (on the plus side, If found out today that my LDH is back within normal limits).
     
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  6. dan062

    dan062 Senior Member

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    Very interesting. That's a lot more severe than anything I've experienced. I'm familiar with the concept of gluten ataxia and other allergens' affects on the basal ganglia, which I think is where movement disorders arise from (I think myoclonus and fasciculations are counted in that category, too). I don't believe that food sensitivities are the root problem, but eliminating them might be a solution to whatever is causing the food sensitivities in the first place.

    Did you follow any kind of a diet besides gluten free? I'm looking at the paleo autoimmune protocol but it's so restricted. Still, if I had to chose between feeling a bit better and eating anything I'd just feeing better in a heart-beat.
     
  7. Sidereal

    Sidereal Senior Member

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    What better way to "give out" about things than to join a forum? ;)

    The ANA+ is not an infrequent finding in ME. You've probably seen this post by Prof. Edwards. Mine was markedly elevated yet my Irish GP didn't think it was necessary to refer me to rheumatology. I had to go abroad to get all the testing I felt I should have. I think given the gravity of the ME diagnosis and the dire long-term prognosis attached to it, one would want to make every reasonable effort to exclude other diagnoses before accepting the "CFS" stain on their medical records. I can't imagine the anger and regret I would feel 10 years later if it turned out I had something treatable all along.

    Having said that--and I think this is really important from the point of view of preserving one's sanity--I only started to make progress with symptom and lifestyle management once I stopped running (metaphorically speaking) from one speciality to another, chasing this or that lab result that's out of range and obsessing about a possible misdiagnosis. It was only once I accepted that ME is a real disease, not simply a diagnosis of exclusion (i.e. trash heap where lazy doctors park their difficult patients) that I started to feel better physically (due to focussing all my energies on learning about pacing and supplements) and psychologically (as I began the process of acceptance). It took me years but I am a slow learner (as well as verbose as you can see).

    I am writing this not to admonish you for seeking an alternative diagnosis, FAR FROM IT. I don't know how long you've been sick or what your level of functioning is but if it's still relatively early days you of course want to rule out other reasonable possibilities. I think everyone should get a thorough work-up before accepting that they have an incurable and basically untreatable condition, not to mention what's a wretched and stigmatising diagnosis in the eyes of the world. I just think that it's also important to not get perpetually stuck in the loop of finding new doctors and chasing down various rabbit holes forever.

    For what it's worth, I saw two rheumatologists in two different countries. The first one said I didn't have any disease of any kind and asked me if I had perhaps taken drugs. She yawned several times during the consult while I was describing my extremely distressing and disabling symptoms as though I was talking about something trivial like the weather.

    The second rheumatologist (faced with the exact same test results and history) thought I looked very sick before I'd even opened my mouth to speak. He ran a lot of tests and concluded I was developing SLE but didn't quite meet the criteria so he gave me the garbage heap diagnosis (UCTD) and treated me with steroids which led to a crash. He was the nicest doctor I ever consulted but I had to stop seeing him very quickly because nice doesn't matter when their treatments are making you worse. Plus, I felt there was just no way for me to explain to a normal person like him what it's like to be someone like me who reacts negatively to everything, even something as trivial as aspirin which he prescribed for the antiphospholipid syndrome. I suppose if I didn't have chemical sensitivities, I would have a hard time believing any of this was real.

    I don't think we have a good way of treating this subtype of ME currently. The standard immunosuppressive approaches seem to make many of us no better and some of us worse.
     
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  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I f a medical opinion is of interest:

    Rheumatoid factor weak positive is very compatible with being healthy and I cannot see why it should exclude a diagnosis of ME. A small proportion of healthy people have quite high RF levels.

    Creatine kinase levels are very dependent on level of exercise, muscle bulk and race (the range is a lot higher in Afro-Carribeans for instance). Less than twice the reference range often has a simple explanation of that sort.

    LDH I know less about but a slight rise may not mean much.

    Without knowing a lot more it is not possible to give a clear opinion but I would certainly consider these tests compatible with a diagnosis of ME or CFS. They might possibly indicate some form of muscle disease that could conceivably relate to the weak leg and that should be checked out clinically but if nothing else is found they do not exclude ME.
     
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  9. CantThink

    CantThink Senior Member

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    My aim within the next year or two is to try to get some form of help - was thinking KDM and/or rheumatologist to double check...

    I never got any co-infections testing for example and that's one area I am thinking is worth pursuing. Plus, about 3 years ago, I was advised to see a rheumatologist by an endocrinologist at a teaching hospital in London. The request got referred back to my GP who couldn't be bothered and I was so fed up and unwell, I gave up and didn't pursue it. The same GP was also asked to organise a sleep study and vitamin D monitoring and didn't do either of those. I lost faith in the system - not that I really had it to start with, but I feel as if sometimes there's only so much you can take.

    Thanks for the link. I'll check it out.
     
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  10. Sidereal

    Sidereal Senior Member

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    I know exactly what you mean. Because of all that I haven't seen any doctors in quite a while. I just don't see a point in wasting precious energy and getting stressed out.
     
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  11. dan062

    dan062 Senior Member

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    Sidereel,

    You've elucidated pretty excellently my constant mental dialogue this past year.

    On the one hand, yes, I'm pretty new into this (one year this Sunday, to be exact) and I'm still at the stage where I don't feel like everything that reasonably should have been excluded has (I haven't had any CAT scans for the inflammatory markers, for example, or EMG/muscle biopsies for the leg weakness).

    I also have two definite 'lines' of diagnostic enquiry left to pursue (vasculitis and, less hopefully, infectious diseases). But the possibility of CFS is definitely becoming more clear to me once I accept the concept that people with this do, in fact, often have auto-antibodies.

    And the thing driving all this is, as you say, the feeling that if something treatable has been missed, and continues to be, that I will be pretty irate (and sick) further down the line.

    On the other hand, I'm itching to delve deeper into the constructive side of things: what can I do to make myself feel better, irrespective of what I have. On that front, I'm just starting to toy around with supplements that seem safe (L-Arginine to see if a little vasodilation seems to help things) and reading a lot about the microbiome and diet's role in regulating immunity.

    I think what it boils down to for me (and I'm guessing for you too), is the belief of having had an inadequate workup, and therefore trying to do your own amateur diagnostics as a means of trying to avoid a missed diagnosis.

    I've said since the start that if I'd been taken into hospital for a couple of days, and had an exhaustive battery of tests (the like of which you hear of others having), that I would never have bothered with trying to build and work through my own differential diagnosis. Why would you do other people's jobs, who know far more about medicine than you ever will? But getting that dream workup seems impossible in this country (my GP, to his credit, did try).

    How did you know when to make the leap of faith and stop searching for answers?
     
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  12. CantThink

    CantThink Senior Member

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    :hug: I concur. I've only seen a doctor in the past 4 years for distinctly non-M.E. issues. I will only go if the thing is unbearable and acute - even then I have to be forced.

    I mentally feel a lot better, less stressed and in control when l don't see them!:rolleyes::smug:
     
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  13. dan062

    dan062 Senior Member

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    Hi Prof Edwards,

    Definitely of help and thank you for volunteering.

    - LDH is back within the reference range. What I'm suspicious of this with one is that it's a measure of actual tissue damage (cell death), as opposed to just the existence of an inflammatory/autoimmune process. Has CFS/ME be shown to cause this?

    - RF. What throws me a little off this being incidental is that the titre seems to correlate to how I'm feeling. It was up around 70 when I first got it tested (during a flare) and then fell back to about 50 a couple of weeks later, when I felt better. Then again, if ANAs can be positive and correlate to symptomology I can't see why RF wouldn't (but why the different auto-antibody?)

    - CK. My rheumatologist's feeling was that this was likely due to my build (male, go to the gym). I think there's a good chance this could be true but am also suspicious in the setting of some muscle weakness.

    I'm mostly unsure what kind of specialist to turn to next. Rheumatology (second opinion)? Neurology? Vasculitis sub-specialist? Infectious diseases? Haematology? There don't seem to be any clear pointers.
     
  14. xchocoholic

    xchocoholic Senior Member

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    I'm in a rush tonight but wanted to say in july 2005 I eliminated all common food intolerances when I gave up gluten. I'm not sure if it played a role or not. It certainly cut back on my inflammation.

    I've only noticed nuero symptoms from gluten. And those have lessened in the last year. I get shiners from dairy, phlegm from soy, sores on my scalp from corn ...

    I noticed some improvements within 24 hours of going on the elimination diet. I didn't feel like i was buzzing anymore. Btw. When i first went to celiac dot com in 2005 buzzing was discussed as a common symptom.

    Odd things improved. Like the feeling I was sitting behind a glass watching the world go by. The feeling like I was standing on a boat that was being tossed by waves sometimes. Gone.

    My vision was distorted when I walked. Objects would be out of focus. Gone. Colors are clearer. I see various shades of green leaves now. For some reason, black on or near black is still unclear tho. It not longer hurt to be touched. I enjoy the sunlight and can sit out for hours.

    I'm guessing these are similiar to symptoms felt by some autistic kids.

    I was on the paleo diet (dr cordain) from 2008-2013 and was able to finally eat several gf foods without reacting as of 1/2014. I'm working my way back to paleo because i feel better off gf processed foods. These are making me sluggish and aren't giving me the energy i get from whole foods. It's tough tho once you've crossed over to the darkside. Lol.

    Imho it's def worth trying the paleo diet. You may want to ease into by going gfdfsf chemical free, etc first.

    Gotta run. X

    Ps. You may want to check out all the info from the doctors at the gluten summit.
     
    Last edited: Oct 31, 2014
  15. Sidereal

    Sidereal Senior Member

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    Hi Dan,

    Great question. I don't think there's a simple answer. After all, there are always more tests you could run. The problem is, there are many obscure metabolic disorders out there. Many more undiscovered conditions. Your chances of getting a diagnosis diminish greatly if you have something rare. You also have to ask yourself, even if you did get a diagnosis of some metabolic disease or other, how would that change the management of your symptoms? Will the stressful diagnostic quest have resulted in a positive impact on your life? It's not like there are good treatments out there for most of these things.

    That said, it is also possible that you do not have something rare but rather something that hasn't quite declared itself yet. If that's the case then the passage of time and progression of symptoms should clarify things. Terrible prospect, I know.

    I think for me I became fed up with it all after I finally arranged to be hospitalised for three days for a diagnostic workup. All I got out of it were a bunch of normal test results, some non-specific abnormalities (certainly no smoking gun) and mild PTSD from the way staff treated me due to my ME. Hospitals are often not safe for us sadly. By the end of day two I was seriously considering checking myself out AMA but I couldn't walk more than a few feet. It was the stuff of nightmares.

    The other thing that made me back off conventional medicine was the trial of steroids. I figured if I really had an inflammatory disorder I would have probably noticed some improvement.

    I don't think that the process of accepting the diagnosis of ME has to involve "giving up" on finding answers. It's more about developing a tolerance of a certain level of uncertainty while still keeping an ear to the ground for other possibilities without obsessing about them or feeling tortured or feeling like perhaps the doctors haven't made enough of an effort for you.

    What you're saying about trying some of the more seemingly benign supplements sounds reasonable. I personally think the microbiome stuff is crucial. I am biased when it comes to the microbiome and I hate talking about it because I don't want to sound like I am proselytising but having now diligently worked on my gut using various prebiotics for the last seven or eight months I've gone from being able to get out of bed only to go to the bathroom or occasionally to the letterbox (and struggling greatly to do so) to being able to leave the house for a few hours once a week unaccompanied for the last several months now. The side effects of this treatment have been surprisingly brutal at times but the gains have been worth it. I'm acutely aware of how far-fetched all this sounds.

    The good thing about this place is that you'll get lots of conflicting ideas and opinions about what to do which to my mind is more helpful than groupthink. Please take everything I say with a large grain of salt.
     
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  16. dan062

    dan062 Senior Member

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    Hi Sidereal,

    That's all really interesting. I value the opinion and experience of anyone suffering from this thing -- no salt needed!

    I just finished reading Blaser's book on the microbiome. It's excellent stuff but also not extremely useful from our perspective: ie, it explains that the dramatic changes to the microbiome from broad spectrum antibiotics can basically last a lifetime, and how various states of dysbiosis are related to certain disease states (this I'm sure everyone with ME already knew).

    Unfortunately, it doesn't go into which ways to restore that state work from a scientific perspective. Perhaps, I suspect, because they're still in the process of trying to work that out, or (I think more likely) because there simply aren't any answers yet. It also doesn't really deal with the role of dietary changes, but I believe that's something which the Human Microbiome Project is currently looking at (they did show recently that paleo had a big effect and down-regulated inflammatory organisms).

    My gut (!) opinion is that doing something as restricted as the paleo/raw/veg/vegan diet is totally unnatural (I just can't believe that we were somehow 'not meant to eat' large swathes of totally natural foods), but if we got into this mess through consuming unnatural things like antibiotics, vaccines, etc that something just as unnatural might be our only ticket out and I'm increasingly losing resistance to trying it for that reason.

    Your hospital stay certainly doesn't sound encouraging. How and where did you manage to arrange the stay and how much (approx) did it end up costing?

    I've actually used your logic a lot in this (it's part of the reason I've been thinking that going paleo would be a good idea because there's a strong chance that it would work out better than the treatment options).

    I can't remember the amount of times I've read about a disease and realized that, practically speaking, there is no way it would be diagnosed without an index of suspicion that simply doesn't exist in modern ten minute consultations.

    Plus, as you mention, there's practically nothing bar infectious diseases that modern medicine seems to be able to actually cure. That's the only area in which I think not being able to diagnose a disease caused by a pathogen which could be effectively targeted would be really tragic from our perspective.
     
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  17. Sidereal

    Sidereal Senior Member

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    Right, unfortunately that's where we are at the moment with regard to gut modification. Lots of trial and error and educated guessing. It's going to take a few years for science to catch up. A lot of work is being done in this area.

    I can't recommend the paleo diet because of what I've seen it do to me and several others. That said, some people do great on it so as for most things, your mileage may vary.

    I'll PM you on the hospitalisation question.
     
  18. xchocoholic

    xchocoholic Senior Member

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    Hi @dan062

    I'm always puzzled when I see the paleo diet referred to as restricted. Please bear with me as I try to explain. This diet wasn't so confusing back in 2007. It was presented to me as common sense. I'm assuming the people helping me kept it simple on purpose since I was still so weak.

    Calling it the hunter gatherer diet might make it clearer. It's all unprocessed organic meats, all fruits and all veggies. Cooked or raw. In whatever quantities man would've found that day. As in, if one were to come up on a field of fresh blueberries that day then that's what they'd have eaten. Until they got sick anyway. Lol.

    Many of us paleo-ish types add potatoes or a few grains or legumes to make it easier and more satiating.

    The idea is that our bodies, like other animals here, are designed to live off what's naturally and readily available on this planet. Unfortunately toxins have affected what's available. We see the results readily when toxins are released into our waterways.

    Once we become chronically ill, theoretically our best chance of recovering is by providing our bodies with the most natural nutrients possible. Of course, some people will recover fully and others won't. Some will partially recover. Optimally people and animals wouldn't be exposed to the toxins we are today.

    Dr Oz had some interesting info on the number of toxins found in our blood now.

    That's not to say that other treatments for viruses, bacteria, parasites, supplemental nutrition, etc won't be necessary.

    Does that help ? X
     
    Last edited: Nov 1, 2014
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  19. dan062

    dan062 Senior Member

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    Thanks for the info
     
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  20. dan062

    dan062 Senior Member

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    Came across the following quote from a paper that I thought I should stick in this thread.
    A very clear explanation and might be helpful for others that suspect an infectious cause for their illness, have what seems to be an atypical autoimmune disease, and have autoantibodies such as ANA, RF, etc:
    http://www.hindawi.com/journals/isrn/2013/324315/

    "The reaction of the body to infections may cause secondary illnesses, such as rheumatic fever and poststreptococcal glomerulonephritis, (...) chronic infections trigger multiple immunological responses potentially associated with specific diseases. Infections can lead to formation of multiple autoantibodies, for example, rheumatoid factor, antinuclear antibodies (ANAs), antiphospholipid antibodies, and antineutrophil cytoplasmic antibodies (ANCAs). The development of autoantibodies in the course of an infection may or may not be associated with manifestations of autoimmune disease."
     

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